NOBODY can get into the mind-set of someone living with dementia. But Jane Gilby puts it as well as humanly possible when she gives us analogies of how life can be incredibly scary, frustrating and lonely for someone with the disease.

When invited to be part of a dementia friend session run by Jane, the lead dementia nurse at Basildon Hospital, I jumped at the chance.

By sacrificing one hour out of my day I got to learn how to make even the smallest difference, how to be that bit more patient and aware when it comes to looking out for people living with dementia – notice I said ‘living’ with not ‘suffering’ because as Jane asks: ‘How would you constantly like to be referred to as a sufferer’?

In short we learn there is more to dementia than the illness – there’s the person. Learning skills such as remembering that someone with dementia may look at and perceive things differently, can help us understand and check our own behaviour.

“For example, we have a scenario of being in a care home and an elderly man with dementia is sitting in a chair in the corner of the room. The sun shines through the window, but because of the patterns on the carpet, to him the floor looks like water,” said Jane.

“So when the carers get him up for a walk he struggles and gets upset. He wants to walk around the edges but they don’t know why and then everyone gets upset.

“For people with dementia there is also evidence that black outdoor mats, for example outside the entrance to a department store, can be perceived as huge holes in the ground.

“One store even stopped placing black mats outside after such as experience.

“If we can understand these things, we can realise why someone with dementia might be acting in a certain way.

“A way to explain dementia is like a Christmas tree with millions of fairy lights. It’s wonderful when you switch it on, but then dementia hits and some of the lights go out. These are memories. Then they flick back on, then they go out, then they come back on. It carries on.”

Jane makes the analogy that dementia is like a bookcase. The bookcase is packed with thousands of books – each one a memory. The bottom shelf, the one that is perhaps the sturdiest, is your childhood. This is safest from swaying when dementia ‘hits’ and starts knocking all the books off and jumbling them up. The top shelf is the one with the most recent memories – those from half an hour ago and so on. These are the books that fall the quickest when dementia strikes.

On the opposite side of the room there is an identical bookcase, but instead of memories each one contains an emotion.

Jane says: “The emotions stay put when dementia hits even if the memories do, so for example if someone thinks: ‘What’s the point of taking mum or dad out for the day to Southend, they won’t remember tomorrow?

“Well maybe they won’t remember the details, but they’ll remember the feeling of being loved, of being with family.

“That emotion won’t leave them, so it’s incredibly important to foster positive emotions among people living with dementia.”

Other strong elements of becoming a dementia friend is to be aware that although it’s a progressive disease and there’s no cure, you can live a good life and get great support.

There is no set rule of how long someone will last and how bad their symptoms will be.

And even though someone with advanced dementia may have problems communicating, Jane says don’t talk over them or try to speak for them as if they don’t exist.

“The person with dementia is the person best placed to tell you what they feel capable of and what they can’t do,” says Jane.

Basildon Hospital has been holding events to mark Dementia Awareness Week, including new dementia friend sessions. There was also a sing-a-long with the hospital choir and the selling of beautiful crochet butterflies – the symbol of dementia awareness – for charity.

Many famous people have become dementia friends. The late Terry Pratchett was a supporter before he died last year from Alzheimer’s. Essex-based actor Ray Winstone is also a dementia friend.

Becoming a dementia friend is about taking positive action – it can be as much or as little as you like, sharing a post on Facebook or being aware and patient if you are with someone with dementia.

To become a dementia friend visit